Legal Disclaimer

Please note that this blog is for informational purposes only, and should not be seen as medical advice. I am not a medical professional — if you're seeking medical advice or have questions about your treatment, please consult your doctor or lymphedema therapist.

Both The Lymphie Life® and "Stay elevated."® are registered trademarks of Alexa Ercolano. All rights reserved.

Body Image

Today kicks off this year’s National Eating Disorders Awareness Week, and I thought it would be a perfect time to discuss the issues of body image and lymphedema.

Body image is something that everyone deals with, but those with lymphedema are especially susceptible to having body image issues. This is something that needs to be addressed because it can lead to much more serious problems, such as depression and eating disorders.

Six years ago, I developed an eating disorder. Although there are several contributing factors to how it began, one of the most prominent ones was that I had thought that if I lost weight, the swelling in my leg would go down. I convinced myself that it was the only way to get rid of my lymphedema, and that I would never be pretty or worthwhile unless my leg was thinner. Over the years I continued to lose weight and wreck my body until, in March of 2010, I was pulled out of college and hospitalized for two months because I was dangerously underweight. I am now in the difficult stages of recovery, and working hard to get my physical and mental self back to a healthy state.

I share this because I feel that body image issues such as the ones I’ve experienced are not uncommon for people living with a visible medical condition like lymphedema. I learned the hard way that losing weight is not the “cure” for lymphedema. (Note: If you are obese or overweight, weight loss can help alleviate your swelling. Be sure to talk with your doctor before starting any weight loss regimen.) The swelling is exactly that – it is swelling, a collection of fluids, that weight loss cannot get rid of entirely. There is no “quick fix,” no magic cure for lymphedema. We can only adjust ourselves and our thinking so that it does not cloud the way we see ourselves as the beautiful, delightful people that we really are or impede us from doing the self-care we need to keep our swelling under control.

What a lot of people don’t realize about lymphedema is that it creates a lot of anguish for those who suffer from it. Little things become tremendous, such as buying shoes or wearing certain kinds of clothing. It affects how you see yourself and how you interact with other people. Even the weather is your enemy – summertime is not a carefree vacation, but instead a season where you’re more exposed, and the heat makes your swelling even worse. You’re constantly worrying about how you look or if your swelling is noticeable. Your swelling becomes conflated with your sense of self-worth and you feel detached, alienated, and different from everyone else. You feel alone.

But why? Why should we let this get in the way of feeling good about ourselves? Why should we obsess over it, be consumed by it? It isn’t healthy, and it certainly isn’t productive. Instead of worrying about our bodies, why not celebrate them?

In honor of National Eating Disorders Awareness Week, let’s challenge ourselves to love how we look. Let’s actually feel confident when we leave our houses in the morning. Let’s wear that skirt with pride, or wear that short sleeved shirt. Let’s be proud of ourselves, let’s flirt with ourselves in the mirror. Let’s be unafraid. Let’s face the world head-on.

Will you join me?

How do you deal with body image? How has it affected your life? What do you do to overcome it? Please share in the comments section below!

Like this:

Alexa is a writer, book hoarder, and cat enthusiast from Baltimore, MD. By day, she works in the marketing and communications department for a large health system; by night, she runs The Lymphie Life. Learn more about her here!

12 comments on “Body Image”

Hmm…I felt amazed when I read this. I actually thought I was the only girl dealing with this. Hi! Lol…my name is Ana and I have Primary Lymphedema in my right leg( below my knee). Recently, I’ve been arguing with my boyfriend and aside from the other two relationships I’ve been in, I always felt as if having Primary Lymphedema makes me feel disgusted and inferior to other girls.
I am 18 yrs. old and I was diagnosed with Primary Lymphedema when I was 12. I was in denial for 4 years and I finally gave up visiting many doctors( I was hoping that Primary Lymphedema wasn’t permanent) . In 2008 I was searching the internet and I found out about this therapy center named Omni Therapy in Bloomfield NJ.- I’ve been wearing the stockings frequently but the compressive garment I wear it once in a blue moon. I get pretty lazy =X!

I don’t mean to tell you my whole story. I just understand where you are coming from because I’ve had body image issues and weight issues because of Primary Lymphedema. Obviously, the hardest part is to accept this chronic disorder and try to maintain it. I admire you because I’m sure that your story will impact other women whore are experiencing the same issue. Best wishes!

This is close to home for me. I suffer from compulsive overeating disorder and also have arm lymphedema. I didn’t wear short-sleeve tops for over ten years. I finally told myself I was free to wear them in the hot weather and now I don’t care what people think. Thank you for this post to tell people with lymphedema that they are not alone.

I am 44 years of age and have been obese since a little girl and now for the past 10 years maybe more my knees down to my feet are absolutely swollened now I haven’t been to the doctor about it because I gather it’s from my weight I hate it but you are a person if someone loves you they will love you the way they are I hate the look of my legs but I don’t think you can have surgery to get rid of the swelling I don’t no it’s sad cause I have really big problems finding shoes and I hate that because I have small feet I can’t be bothered anymore because it’s bad enough finding clothes and also shoes I get very upset let me no I am in Australia let me no anyone if surgery helps

I don’t think that is true…that losing weight doesn’t help w Lymphedema. I was at a very “normal” weight for my 5’9″ frame (actually a little underweight at 120 lbs) for most of my adult life. Then I had to start a heavy regimen of Prednisone due to respiratory concerns. I gained. And gained. And gained. My left ankle started swelling first. Followed by my right. Things got BAD in years since. I gained more and more. No doctors would say it was due to weight. I was miserable. Wouldn’t wear shorts or skirts. Hot in the summer. Last Nov. I started losing weight and lo and behold the LE is going away! Not all at once but it is getting sooo much better the more I lose. I am amazed so many docs I saw never even considered the fact that my obesity could cause this, and told me it would never go away.

The day I came home with my garments, I put every pair of shorts and every skirt/dress into a bag and took them to Goodwill. I never wear shorts in public. I hate the stares & the questions. Lymphedema took away my ability to dress like a woman and not feel like a freak show.

Michelle, that really stinks that the lymphedema has had such a big impact on you. You are no ‘freak show’ – and if people treat you like you are, it says more about them than it does about you. Your lymph system needs some extra support so it can work properly – just like someone who needs glasses to see properly.

Would it help to remind yourself that you don’t expect others to change what they do simply because of your opinion – and so neither should you change what you do, simply due to theirs? They are responsible for their own bodies and behavior – your lookout is your body and what you do with it.

If you feel like wearing a pretty skirt or a flowing dress, or some short shorts, do it. You’ll feel stronger for it. And you may be surprised at how little people notice your stockings! It never hurts to be prepared though – if you do get a comment, have a quick response ready to go – whether it’s an informative one or a flippant one – or a combination of both, that’s your call.

I’m 73 yo. I’ve had what is called: “genetic” lymphedema (not related to cancer) in both legs almost all my life. I’m currently obese but I’ve been variations of overweight forever. I lost a great deal of weight in college. However I was still “malformed.” While attending a college dance one evening, I walked past two “frat” boys. I heard one say to the other, “She’s all right on top but not on the bottom!” They chuckled together as I died and left the dance ASAP. That comment has stayed with me the rest of my life. I began to recede from going out in public. I quit going to what were called “open” dances where you attended without a date. I had dates to formal dances, always greatful for floor length dresses. In my twenties I was wearing pants only; no skirts or dresses. My LE increasingly worsened as the years went by. I did not get married until I was 33 yo. Divorced at age 50 for a variety of reasons including my poor self-esteem (which affects every part of your psyche including your sexuality.)
Some years ago I tried to treat my LE with compression wrappings, compr. stockings, massaging, and elevating my legs. When compression was used, my legs would shrink somewhat but then swell back to their usual size again within an hour or so (it seemed.) I finally gave up trying to “fix” the situation. From lifelong “fat legs” I learned years ago to never wear skirts or dresses. I have only worn pants. Certainly my fat legs were still noticeable even in pants but psychologically I felt more acceptable in public. I learned to put on my cheerful, funny, outgoing personality and to be friendly no matter how “different” or ugly I felt.
Fat legs makes exercising by walking or running more difficult because you begin to adapt to carrying the extra thickness in your legs by swinging your legs outward with each step. That sends you off balance as time goes by. It adds extra effort. It cuts down your endurance. Soon you quit trying to exercise. Then you get bigger! You’ve lost your marriage. Inactivity causes loss of friendships. You quit trying to compensate. You quit putting out the effort to be “outgoing, funny, and friendly.” You begin to isolate. Your hip joints deteriorate and you get hip replacements. Then your knees give out. You start using a walker…like the other elderly 80-somethings (remember you’re 73.) in your retirement facility. Putting on your friendly, outgoing, funny personality becomes more difficult. You hate thin people. You long for weapons of mass destruction with which to, well…commit mass destruction! Truth be told you wonder why you’re still alive. You eat considerably more sugary foods. Ice cream or donuts will fix anything. You don’t give a shit about anything. Your daughter’s mother-in-law is petite and plays with your grandkids as you sit on your broad ass and watch. Your grandkids surely love their other Grammie better. You envision varieties of murder and mentally practice different ways of accomplishing the deed. Time goes by and you continue deteriorating. “And that’s how it is” in today’s news as Chet Huntley or whoever that newsman was who used to say that.

I was diagnosed with lymphedema in my right at the age of 9. It’s been a very hard life for me. I had to travel to MUSC for almost 10 years. They couldn’t fix my problem, they wanted to experiment on me but I said no. I was one of the first to be diagnosed with that in SC. I been in and out the hospital for depression. I hate the fact that I’m not normal like everyone else. I tried to commit suicide several times because I wanna be able to wear what all the other women wears. I can’t never wear leggings, shorts, or skirts. I can’t wear sandals and flip-flops. I still cry at night whenever I go to bed. For the last 3 years I been having alot of throbbing pain in my leg. It’s aches so bad that I be in tears. Now 34 years of age been dealing with this for 25 years. I told the doctor that I didn’t think I could work but they said that it wasn’t a disability. I been on my job 5 years and I was once put out of work for 2 weeks because my leg swelled tremendously and I couldn’t been my leg to walk. I been searching for a cure. I found a place that do surgery but I don’t have transportation there. Im a single mother of 4. I hid my problems from men I dated except 2 of them. If guys really start to catch feelings for me i just walk away from them because i don’t wanna be labeled as handicap or disabled. I just hate to hear people say that word. But one day Im gonna make it to have that surgery. Thanks for letting me share my story.